Forums

[Jackgirl10]

Hi I was wondering if anyone has the dates for any forums in 2019. Hoping there is going to be one in Wales or somewhere near. Here's hoping.

[Mazcd Partner MPNVoice]

We only have one confirmed so far, in Cork, I will put details of others on our website, on this forum and will send out an email and postal letter once they are booked. Should be in Llandudno late Sep, just sorting out date and venue. Maz

[RedSunrise]

Hello - I take it you live in Wales? Me too. If you find out about one nearby would you be so kind as to let me know. Do yiu by anyway live is Swansea (you're user name being 'jack'. I live in Bridgend and work in Swansea. It's comforting to know that there are people going through similar issues nearby.

Eve x

[Jackgirl10 in reply to RedSunrise]

Hi yes I live in Swansea and worked in Bridgend many years ago. Do you have polycythemia? Maz has replied saying that there should be a forum in September but in Llandudno. I was hoping it would be Cardiff.

[RedSunrise in reply to Jackgirl10]

Ha! I thought you might be from Swansea - only a fellow west-walian would guess that! No, I'm likely ET and I'm 39. How long ago was your diagnosis?

Yes, I just read Maz's post after I sent mine to you. Cardiff would have been good. But, if Llandudno is on in Sept I may consider it. In fairness I'm quite prepared to travel to go.

[Jackgirl10 in reply to RedSunrise]

Hi I'm 54 and been diagnosed 18 months ago after a long period of symptoms which nobody picked up on. Seems to be a common theme with mpns. Nevermind will look at trying to get to the Llandudno forum but it may easier to get elsewhere if it's somewhere like Bristol.

[RedSunrise in reply to Jackgirl10]

I'm sorry to hear of what you've been through - I just had a look at your previous posts. It's terrible to feel overlooked especially as you work in 'the system'. Perhaps we'll bump into each other at a forum!

[Sanmob in reply to RedSunrise]

Hi,

I also live in Bridgend and wonder whether we could set up a support group in the area. It would be nice to meet fellow MPNers. What do you think?

Sandra

[RedSunrise in reply to Sanmob]

Hello Sandra - gosh I am so sorry for the horrendously late reply. That does sound good and would be something I'm interested in. I've got lots of 'tests' and appointments over the coming weeks so it would be good to sort something out over the coming months. Actually, I've found a Chronic Support Group in Cardiff through Leukaemia care. They are running a session in culverhouse Cross on 6th March 2.30 - 4.30. It's open to people with MPNs - I've emailed and they said I can go. I'm going to see if it's of some help. Perhaps I'll see you there? I'm going to share it on a separate post.

Thanks for your message.

Eve x